“What Can I Do?”

January 25 marked the one-year anniversary of my ALS diagnosis.  Obviously there have been many enormous shifts and changes in my life. It’s been a very long year that included stopping work, losing my voice, losing my ability to eat and drink, a visit to the hospital, an excess of saliva and waning strength in my limbs. However, 2020 also offered opportunities for gratitude and a more acute ability to prioritize, find clarity and further value relationships.

People very often ask, “What can I do?”, or “How can I help?”.  Well, if it wasn’t STILL the season of COVID, you could come for a visit or have me over for an outing, but, really, there’s isn’t much anyone can do for me right now. There will come a time when my daughter and I will welcome practical help, but we’re not there yet. I’ll let you know when…

However, here is actually something you can do – sign up as a supporter on the ALS Action Canada website. A group of ALS patients and family members  across Canada have been working hard to improve access to treatments and clinical trials for Canadian PALS (People with ALS). I encourage you to please check out the ALS Action website, in particular the Take Action section: https://alsactioncanada.org/take-action/.  I am a part of this group, but not in the leadership. The main players are a talented and dedicated group of ALS patients and family members using their formidable skills and valuable experience in the area of policy change and advocacy.

May I rant here? It makes me feel angry that people living with ALS  who have limited time left in their lives should have to spend their precious time and energy doing this. I think it’s truly selfless that they do so. Make no mistake – it’s unlikely that they will live to see the benefits of their persistence. Positive changes will chiefly benefit ALS patients who likely haven’t been diagnosed yet.

ALS moves fast. It’s also hitting younger people – although the typical patient is still over 50, there are more and more people in their 20’s and 30’s being diagnosed, and I’ve met quite a few in their 40’s.  I recently read about a fundraiser in the US for an 11-year ALS patient, which I found shocking. Unfortunately, the rate of ALS is rising – might be the aging population or environmental factors, but no one knows for sure.

It’s a revolving door and a numbers game. People often don’t realize that the ALS incidence rate is as high as Multiple Sclerosis (MS) because ALS patients die so quickly that there is never as large a population of ALS patients as other conditions. PALs who get really involved and contribute to advocacy have a limited time to do so and so the leadership must constantly shift and change. The lifetime risk of developing ALS is 1 in 400, which is about equal to MS and is five times higher than Huntington’s disease. However, the rapid progression and deaths of people with ALS have prevented the establishment of a critical mass and a loud collective voice. This dynamic is driving our demands for urgent action.

The irony of the fact that I am advocating for myself after many years of advocating for others is not lost on me. One of my children has a disability, so I have spent decades advocating for him and others with developmental disabilities (DD). Some of the same issues apply to the population of people with DD – lack of a collective ‘voice’ and that of being an invisible group. Individuals with DD often cannot represent themselves in order to advocate. I am familiar with the complaint of ‘not being heard’, and the situation of being dependent on others to advocate.

If someone in BC is diagnosed with MS, Alzheimer Disease or Huntington Disease, and directed to the provincial clinic, this is where they go:

The Djavad Mowafaghian Centre for Brain Health on the UBC campus in Vancouver.

But newly diagnosed ALS patients who are directed the ALS Provincial Clinic are sent to windowless rooms in the basement of GF Strong Rehabilitation Centre:

The BC ALS Clinic cannot give information regarding ALS clinical trials because BC does not have any ALS clinical trials, and no information is given regarding possible participation in trials outside BC. Clinical trials are of critical importance to ALS patients.  Clinical trials offer a sliver of hope, and are also a way to contribute to research and finding a cure. There are only 2 approved medications available in Canada – both only work to extend lifespan by a few months, so clinical trials are the only way to try out a drug that may help. There isn’t even a full-time neurologist working at the BC clinic, and no respirologist at all.   Imagine how disheartening it would be to go for the first time to a provincial clinic like this and realize that there is no hope being offered?

I have not been to the Provincial ALS Clinic. At the same time I initially went to my GP about my slurred voice, a neurologist with ALS experience moved to Kelowna from Calgary, so I have been his patient. Interior Health provides other support like respiratory, speech and occupational therapy, and there is a respirologist in Kelowna with experience in ALS.  I’m very thankful that I can stay local with my care.

Some BC ALS patients travel regularly to other cities in Canada (Montreal in particular), and prior to COVID, to American medical centres so that they can  participate in clinical trials. Usually all travel costs are covered by the patient, so many patients are automatically disqualified for financial reasons. And, of course, after all the travel and expenses, there is a good chance that the patient may have received a placebo – patients don’t find out whether they really received the drug until the trial is over. I was accepted into the Healy Platform trial in both Seattle and Los Angeles, but travel to the US is not desirable at this time. I thought I was accepted into a trial in Calgary but the deadline was cut off early and I didn’t get in. It just shouldn’t have to be so difficult…

So lending your support for policy changes is no small thing – it really helps. Future lives depend on it.

Tell your MP and MLA that you support better access to treatments and trials for ALS patients. Send an email to Adrian.Dix.MLA@leg.bc.ca , cc your MLA and  Renee.Merrifield.MLA@leg.bc.ca  (Critic for Health).  Request that immediate action be undertaken to significantly improve ALS treatment options and care in BC. The email doesn’t have to be lengthy or scholarly – it’s the number of responses that make a difference.

ALS isn’t incurable, it’s underfunded.

Thank you for your support,

Sara